Children's interaction with a dog when having Animal Assisted Activity in paediatric hospital care.

The aim of the study was to investigate the interaction process between child and dog and how it possibly affects children's wellbeing during Animal Assisted Activity. Children have reported negative feelings such as fear and anxiety when being cared for in hospital and various kinds of complementary treatment can alleviate this. Different complementary treatments, including interaction with a dog, can create positive emotions and the treatment has been reported to have both physiological and psychological beneficial effects. However, there is a lack of studies describing children's interaction with a dog. This is an observational study, analysed from field notes with qualitative content analysis using a deductive approach. Children (n = 49) aged 3-18 years of age at a paediatric hospital voluntarily participated in the study. The results are reported on a six-level scale that describes the child-dog interaction: 1. Passive interaction, 2. One-way non-spoken communication, 3. Facilitating the interaction, 4. Interaction by activity encouragement, 5. Interaction initiated by the child, and 6. Interaction through deepened interplay. All children attained level five. Eighty-nine per cent attained level six and these children interacted fully, having a two-way deepened interplay with the dog. Further, when the interaction proceeded to a deepened interplay this affected the children positively both physically and emotionally. Structured Animal Assisted Activity with a dog that includes an introduction, an active part and a relaxing part is a suitable model to offer children in paediatric hospital care since the children attained a child-initiated interaction or interaction through deepened interplay.

Co-creation of a Serious Game About Radiotherapy: Participatory Action Research Study With Children Treated for Cancer.

BACKGROUND: Children with cancer who have to undergo radiotherapy can experience fear, because they have no prior knowledge of the treatment. One way of teaching children about the treatment and reducing their fear is to prepare them for it through serious games. Involvement of the end user in the design process within medicine is a way of ensuring that the product being developed will fit the intended user. OBJECTIVE: The aim was to outline the contributions made by children and their parents through participatory action research when designing a serious game about radiotherapy. METHODS: By means of participatory action research, children and their parents participated in the development of a serious game about radiotherapy. Nine children (7-10 years old) were included, each with an accompanying parent. A qualitative approach was used that included interviews and participant observation. Six rounds of iterative development process were used with the children and their parents. Meetings with the children were held either face-to-face or online. Each round resulted in a list of suggestions for changes to the game. A thematic analysis was performed based on the list of proposed changes, underpinned by all gathered data, to highlight how the children's participation changed the game. RESULTS: Two main themes were identified. The first theme was "The children's participation was affected by their health and treatment" and included the following subthemes: "an opportunity to share emotions and perceptions of radiotherapy" and "the possibility to participate was affected by the severity of the disease." The second theme was "participation allowed becoming an active part of game development" and included the following subthemes: "the opportunity to express sentiments about the game," "the emergence of a playable game through the children's contributions," and "the necessity of understanding the text." CONCLUSIONS: The method used in this study made the children active participants, and our results suggest that this method can be used by health care researchers to cocreate serious games with children. It is necessary to inform the children involved that the process takes time, and that the process can be altered to allow as much participation as possible without placing a burden on them. The children's illness affected their possibility to take part; thus, it is crucial to accommodate the children's needs when conducting similar studies. The parents' participation facilitated the meetings for their children, even though their involvement in the game design was negligible.

Understanding of the transition to adult healthcare services among individuals with VACTERL association in Sweden: A qualitative study.

Current knowledge of transitional care from the perspective of individuals with congenital malformations is scarce. Their viewpoints are required for the development of follow-up programs and transitional care corresponding to patients' needs. The study aimed to describe expectations, concerns, and experiences in conjunction with transfer to adult health care among adolescents, young adults, and adults with VACTERL association, (i.e. vertebral defects, anorectal malformations (ARM), cardiac defects (CHD), esophageal atresia (EA), renal, and limb abnormalities). Semi-structured telephone interviews were performed and analyzed with qualitative content analysis. Of 47 invited individuals, 22 participated (12 males and 10 females). An overarching theme emerged: Leaving the safe nest of pediatric health care for an unfamiliar and uncertain follow up yet growing in responsibility and appreciating the adult health care. The participants described expectations of qualified adult health care but also concerns about the process and transfer to an unfamiliar setting. Individuals who were transferred described implemented or absence of preparations. Positive and negative experiences of adult health care were recounted including being treated as adults. The informants described increasing involvement in health care but were still supported by their parents. Ongoing follow up of health conditions was recounted but also uncertainty around the continuation, missing follow up and limited knowledge of how to contact health care. The participants recommended information ahead of transfer and expressed wishes for continued health care with regular follow up and accessibility to a contact person. Based on the participants' perspective, a transitional plan is required including early information about transfer and follow up to prepare the adolescents and reduce uncertainty concerning future health care. Meetings with the pediatric and adult team together with the patient and the parents are essential before transfer. Follow up should be centralized to centers with multi-professional teams well-experienced with the condition. Further studies are warranted to evaluate the transition process for adolescents and young adults with complex congenital health conditions.

Children report positive experiences of animal-assisted therapy in paediatric hospital care.

AIM: To evaluate children's experiences of and responses to animal-assisted therapy using a therapy dog as complementary treatment in paediatric hospital care. METHODS: The study was performed using mixed methods, by means of qualitative and quantitative data. Fifty children in a paediatric surgery ward, at a tertiary hospital in Sweden, were included between February 2016 to May 2017. Children answered questions about feelings of well-being and experiences of the hospital stay before and after animal-assisted therapy, and experiences of their interaction with a therapy dog. RESULTS: The children's well-being increased from moderately good before to very good after animal-assisted therapy, and the children assessed the hospital stay as better after than before. The vast majority of the children (93%) assessed the interaction with the dog as very good. The children described mixed experiences before and mainly positive aspects of joy, satisfaction and pain relief after animal-assisted therapy. CONCLUSION: The children's responses before interaction, of both a positive and negative nature, show a focus shift after the interaction with a therapy dog to mainly positive nature regarding self-reported feeling of well-being and experiences of the hospital stay. Using a therapy dog in paediatric hospital care is suitable complementary treatment.

From crisis to self-confidence and adaptation; Experiences of being a parent of a child with VACTERL association - A complex congenital malformation.

AIM: Knowledge is scarce regarding mothers' and fathers' experiences of being a parent of a child with VACTERL association-a complex malformation. The aim of the study was to describe experiences of being a parent of a child with VACTERL association. METHOD: Semi-structured interviews were performed with ten mothers and nine fathers face-to-face or by telephone and analyzed by using Qualitative content analysis. RESULTS: The parents described crisis reactions at the discovery of malformations in their child. Involvement in care was reported from the initial hospital admission until actively taking responsibility for treatments at home. Eventually the health condition became an integrated part of everyday life. The parents expressed the importance of meeting other families with a child with VACTERL. Descriptions were given of more or less professionalism with perceived discrepancies of knowledge and experience between the healthcare professionals in the tertiary hospital and those in the local hospital. Difficulties in receiving medical support during the initial period at home were described. Furthermore, emotional support and practical arrangements regarding parental accommodation and transportation varied. CONCLUSION: Being a parent of a child with VACTERL association involves crisis, mixed emotional reactions and shared responsibility for the child´s treatment and care with the professional care providers. Psychological processing, good medical care and support from experts, and peer support from other parents is essential in the parents' struggle to reach self-confidence and adaptation. A care plan with individualized tailored care for each child including a training and support plan for the parents is warranted. To reduce the described discrepancies in knowledge and experience between the local and tertiary hospital, video sessions with the parents and responsible professionals at the local and tertiary hospital could be an appropriate mode of transferring information at discharge and follow up of the child.

Staff's Experiences of Preparing and Caring for Children With Cancer and Their Families During the Child's Radiotherapy.

BACKGROUND: Approximately one-third of children diagnosed with cancer are treated with radiotherapy (RT). Staff experiences of preparing and distracting the children and their families during a child's RT are sparsely described. OBJECTIVE: The aim of this study was to describe staff experiences of preparing and caring for children with cancer and their families during the child's RT. INTERVENTION/METHODS: Semistructured interviews with staff were performed at 3 Swedish RT centers. The interviews were analyzed using inductive qualitative content analysis. RESULTS: The analysis revealed 5 categories summarizing the staff members' experiences. These include the following: experiences of various emotions; care for the child and the child's family; commitments before, during, and after RT; organizational issues; and experiences of the intervention and suggestions for improvement. CONCLUSIONS: The preparatory intervention facilitated the ability of staff members to conduct their work, although the intervention should be specifically tailored to each child. Meeting children and their families and providing care to both during RT were challenging. The staff strived to provide optimal care for each child and family. Interdisciplinary teamwork and organizational acceptance for the importance of preparation and distraction were essential. IMPLICATIONS FOR PRACTICE: A future challenge will be to provide opportunities for all staff involved in the treatment of children with cancer to develop their skills continuously in order to provide high-quality preparation and distraction to all children undergoing RT, regardless of the geographical location of the RT center.

From skepticism to assurance and control; Implementation of a patient safety system at a pediatric hospital in Sweden.

BACKGROUND: The use of evidence-based practice among healthcare professionals directly correlates to better outcomes for patients and higher professional satisfaction. Translating knowledge in practice and mobilizing evidence-based clinical care remains a continuing challenge in healthcare systems across the world. PURPOSE: To describe experiences from the implementation of an Early Detection and Treatment Program for Children (EDT-C) among health care professionals at a pediatric hospital in Sweden. DESIGN AND METHODS: Sixteen individual interviews were conducted with physicians, nurses and nurse assistants, which of five were instructors. Data were analyzed with qualitative content analysis. RESULTS: An overarching theme was created: From uncertainty and skepticism towards assurance and control. The theme was based on the content of eight categories: An innovation suitable for clinical practice, Differing conditions for change, Lack of organizational slack, Complex situations, A pragmatic implementation strategy, Delegated responsibility, Experiences of control and Successful implementation. CONCLUSIONS: Successful implementation was achieved when initial skepticism among staff was changed into acceptance and using EDT-C had become routine in their daily work. Inter-professional education including material from authentic patient cases promotes knowledge about different professions and can strengthen teamwork. EDT-C with evidenced-based material adapted to the context can give healthcare professionals a structured and objective tool with which to assess and treat patients, giving them a sense of control and assurance.

Children's experiences and responses towards an intervention for psychological preparation for radiotherapy.

BACKGROUND: Children can experience distress when undergoing radiotherapy as a reaction to being scared of and unfamiliar with the procedure. The aim was to evaluate children's experiences and responses towards an intervention for psychological preparation for radiotherapy. METHODS: A case control design with qualitative content analysis of semi-structured interviews and statistical analysis of anxiety ratings were used for evaluating a strategy for psychological preparation and distraction. Fifty-seven children aged 2 to 18 years and their parents participated - 30 children in the baseline group and 27 in the intervention group. Child interviews were performed and the child and their parents rated the child's anxiety. RESULTS: The intervention was most appropriate for the younger children, who enjoyed the digital story, the stuffed animal and training with their parents. There were some technical problems and the digital story was not detailed enough to fit exactly with various cancer diagnoses. Children described suggestions for improvement of the intervention. The ratings of the child's anxiety during radiation treatment showed no differences between the baseline group and the intervention group. CONCLUSIONS: The children of all the age groups experienced their interventions as positive. The strength of the intervention was that it encouraged interaction within the family and provided an opportunity for siblings and peers to take part in what the child was going through. Future research on children's experiences to interventions should be encouraged. The intervention and the technical solutions could improve by further development. TRIAL REGISTRATION: The study design was structured as an un-matched case-control study, baseline group vs. intervention group. TRIAL REGISTRATION: ClinicalTrials.gov NCT02993978 , Protocol Record 2012-113-31 M. Retrospectively registered - 21 November 2016.

Parents' Experiences and Responses to an Intervention for Psychological Preparation of Children and Families During the Child's Radiotherapy.

The aim of this study was to evaluate parents' experiences and responses to a systematic intervention for psychological preparation of children and families during the child's radiotherapy (RT) treatment. In this case-control study at 3 pediatric RT centers, an intervention with a preparatory kit, including age-adjusted information on tablets, gift of a stuffed toy or a pair of headphones, a parent booklet, and toy models of the computed tomography and RT machines was implemented. For evaluation, a mixed methods data collection was conducted. A total of 113 parents of children undergoing RT were included-n = 59 in the baseline group and n = 54 in the intervention group. Health-related quality of life was rated low, but parents in the intervention group expressed less anxiety after the RT compared with the baseline group. They found information suitable for their young children, siblings, and friends were involved and the toy models were used for play. Parents expressed positive feelings due to close interaction with staff and each other within the family. The solutions developed within a human-centered design approach and shaped as a systematic family-centered strategy contributed to parents understanding and coping with the child's RT.

Implementation of Pediatric Early Warning Score; Adherence to Guidelines and Influence of Context.

PURPOSE: To describe data of Pediatric Early Warning Score (PEWS) registrations and to evaluate the implementation of PEWS by examining adherence to clinical guidelines based on measured PEWS, and to relate findings to work context. DESIGN AND METHODS: PEWS, as a part of a concept called Early Detection and Treatment-Children (EDT-C) was implemented at three wards at a Children's Hospital in Sweden. Data were collected from the Electronic Patient Record (EPR) retrospectively to assess adherence to guidelines. The Alberta Context Tool (ACT) was used to assess work context among healthcare professionals (n=109) before implementation of EDT-C. RESULTS: The majority of PEWS registrations in EPR were low whereas 10% were moderate to high. Adherences to ward-specific guidelines at admission and for saturation in respiratory distress were high whereas adherence to pain assessment was low. There were significant differences in documented recommended actions between wards. Some differences in leadership and evaluation between wards were identified. CONCLUSIONS: Evaluation of PEWS implementation indicated frequent use of the tool despite most scores being low. High scores (5-9) occurred 28 times, which may indicate that patients with a high risk of clinical deterioration were identified. Documentation of the consequent recommended actions was however incomplete and there was a large variation in adherence to guidelines. Contextual factors may have an impact on adherence. PRACTICE IMPLICATIONS: EDT-C can lead to increased knowledge about early detection of deterioration, strengthen nurses as professionals, optimize treatment and teamwork and thereby increase patient safety for children treated in hospitals.

Caring for the Acutely, Severely Ill Child-A Multifaceted Situation with Paradoxical Elements: Swedish Healthcare Professionals' Experiences.

UNLABELLED: The aim of this study was to describe healthcare professionals' experience of caring for acutely, severely ill children in hospital in Sweden. DESIGN AND METHODS: Five focus group interviews were conducted with nurses, nurse assistants and physicians comprising a total of 20 participants. Data were analyzed using qualitative content analysis. RESULTS: An overall theme emerged that describes healthcare professionals' experiences as: "being in a multifaceted area of tension with paradoxical elements". The theme is based on three categories: proficiency of the individuals and the team is the fundamental base; interactions are crucial in an area of tension; and wellbeing of the individual is a balance of contradictory emotions. With maintained focus on the ill child, proficiency is the fundamental base, interactions are crucial, and moreover contradictory emotions are described. CONCLUSIONS: The interplay based on proficiency may influence the assessments and treatments of acutely, severely ill children. PRACTICE IMPLICATIONS: Recognizing the multifaceted area of tension with paradoxical elements, practical teamwork exercises, a structured approach, and assessment tools could be a possible way to develop interprofessional team collaboration to improve the care of acutely, severely ill children in order to increase patient safety.

It Is Tough and Tiring but It Works--Children's Experiences of Undergoing Radiotherapy.

Approximately 300 children ages 0 to 18 are diagnosed with cancer in Sweden every year, and 80 to 90 of them undergo radiotherapy treatment. The aim was to describe children's experiences of preparing for and undergoing radiotherapy, and furthermore to describe children's suggestions for improvement. Thirteen children between the ages of 5 and 15 with various cancer diagnoses were interviewed. Data was analyzed using qualitative content analysis. The findings revealed five categories: positive and negative experiences with hospital stays and practical arrangements; age-appropriate information, communication, and guidance to various degrees; struggle with emotions; use of distraction and other suitable coping strategies; and children's suggestions for improvement during radiotherapy. An overarching theme emerged: "It is tough and tiring but it works". Some key areas were: explanatory visits, the need for information and communication, being afraid, discomfort and suffering, the need for media distraction, dealing with emotions, and the need for support. A systematic, family-centered preparation program could possible help families prepare and individualized distraction during radiotherapy could contribute to reducing distress. Further studies with interventions could clarify successful programs.

Development of health-related quality of life and symptoms of anxiety and depression among persons diagnosed with cancer during adolescence: a 10-year follow-up study.

OBJECTIVE: The main aim was to investigate the development of health-related quality of life (HRQOL) and symptoms of anxiety and depression in a cohort diagnosed with cancer during adolescence from shortly after up to 10 years after diagnosis. METHODS: Participants (n = 61) completed the SF-36 and the HADS shortly; six, 12, and 18 months; and two, three, four, and 10 years (n = 28) after diagnosis. Polynomial change trajectories were used to model development. RESULTS: Polynomial change trajectories showed an initial increase which abated over time into a decrease which abated over time for the SF-36 subscales Mental Health and Vitality; an initial decline which abated over time into an increase for HADS anxiety; and an initial decline which abated over time into an increase which abated over time for HADS depression. The SF-36 mental component summary showed no change from two to 10 years after diagnosis whereas the SF-36 physical component summary showed an increase from two years after diagnosis which declined over time. Ten years after diagnosis 29% reported possible anxiety. CONCLUSIONS: Development of HRQOL and symptoms of anxiety and depression appears to be non-linear among persons diagnosed with cancer during adolescence. Well into permanent survivorship an increase in symptoms of anxiety is shown and approximately a third of the participants report possible anxiety. The findings indicate the need for: studies designed to pinpoint the times of highest psychological risk, clinical follow-up focusing on psychological problems, and development of effective psychological interventions for survivors of adolescent cancer. © 2015 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.

Children Undergoing Radiotherapy: Swedish Parents' Experiences and Suggestions for Improvement.

Approximately 300 children, from 0 to 18 years old, are diagnosed with cancer in Sweden every year. Of these children, 80-90 of them undergo radiotherapy treatment for their cancer. Although radiotherapy is an encounter with advanced technology, few studies have investigated the child's and the parent's view of the procedure. As part of an ongoing multicenter study aimed to improve patient preparation and the care environment in pediatric radiotherapy, this article reports the findings from interviews with parents at baseline. The aim of the present study was twofold: to describe parents' experience when their child undergoes radiotherapy treatment, and to report parents' suggestions for improvements during radiotherapy for their children. Sixteen mothers and sixteen fathers of children between 2-16 years old with various cancer diagnoses were interviewed. Data were analyzed using content analysis. The findings showed that cancer and treatment turns people's lives upside down, affecting the entire family. Further, the parents experience the child's suffering and must cope with intense feelings. Radiotherapy treatment includes preparation by skilled and empathetic staff. The parents gradually find that they can deal with the process; and lastly, parents have suggestions for improvements during the radiotherapy treatment. An overarching theme emerged: that despair gradually turns to a sense of security, with a sustained focus on and close interaction with the child. In conclusion, an extreme burden was experienced around the start of radiotherapy, though parents gradually coped with the process.

No effect of basic bladder advice in enuresis: A randomized controlled trial.

BACKGROUND: There are two firstline, evidence-based treatments available for nocturnal enuresis: desmopressin and the enuresis alarm. Prior to use of these therapies, international experts usually recommend that the children also be given basic bladder training during the daytime. The rationale behind this recommendation is that daytime bladder training or urotherapy, is a mainstay in the treatment of daytime incontinence caused by detrusor overactivity. Still, there is, as yet, no firm evidence that daytime bladder training is useful against nocturnal enuresis. AIM: To explore whether basic bladder advice has any effect against nocturnal enuresis. STUDY DESIGN: The study was prospective, randomized, and controlled. The evaluated intervention was bladder advice, given in accordance with ICCS guidelines and focused on regular voiding, sound voiding posture, and sufficient fluid intake. Forty children aged 6 years or more with previously untreated enuresis, but no daytime incontinence, were randomized (20 in each group) to receive either first basic bladder advice for 1 month and then alarm therapy (group A) or just the alarm therapy (group B). Based on power calculations, the minimum number of children required in each treatment arm was 15. RESULTS: The basic bladder advice did not reduce the enuresis frequency in group A (p = 0.089) and the end result after alarm therapy did not differ between the two groups (p = 0.74) (see Table). Only four children in group A had a partial or full response to bladder training, and two of these children relapsed immediately during alarm therapy. DISCUSSION: This was the first study to evaluate, in a prospective, randomized manner, the value of daytime basic bladder training as a treatment of enuresis. It was found that the treatment neither resulted in a significant reduction in the number of wet nights, nor did it improve the success of subsequent alarm therapy. CONCLUSIONS: The recommendation that all children with enuresis be given bladder training as a firstline therapy can no longer be supported. Instead, we recommend that treatment of these children start with the enuresis alarm or desmopressin without delay.

Infrequent enuresis, the uninvestigated majority comparisons between children with enuresis of varying severity.

OBJECTIVE: The main objective was to compare children with frequent enuresis (FE) and children with infrequent enuresis (IE) using anamnestic data and variables related to bladder and kidney function. A secondary aim was to look at the group of children who wet their beds every single night, a phenomenon we chose to call constant enuresis (CE). SUBJECTS AND METHODS: The parents recorded the number of wet and dry nights for a period of 14 days, and measured the voided volumes as well as nocturnal urine production for 48 h. History data relevant to bladder and bowel function was also recorded. RESULTS: The children could be grouped as follows: IE, n = 14; FE, n = 18; and CE, n = 22. The children with IE were slightly older than the other groups, IE mean 7.57; FE mean 6.22; CE, mean 6.56 (p = 0.004). When comparing the groups in terms of the measured parameters, only one significant difference was found: the FE group had larger average daytime voided volumes, but only when the first morning void was included. The only significantly differing anamnestic variable was previous daytime incontinence, which was more common among the children in the IE group. CONCLUSIONS: When comparing children with varying enuresis severity, no major differences regarding bladder function and urine production were found. Furthermore, children with infrequent enuresis tend to be slightly older when they seek medical help.

Negative and positive consequences of adolescent cancer 10 years after diagnosis: an interview-based longitudinal study in Sweden.

OBJECTIVE: The aim of this study was to provide insight into survivor-reported negative and positive consequences of cancer during adolescence 10 years after diagnosis and compare these with consequences reported 3 and 4 years after diagnosis. METHODS: Three, 4, and 10 years after diagnosis, survivors of adolescent cancer were interviewed about negative and positive consequences due to their cancer experience. Manifest content analysis was used to identify categories of reported consequences. Categories of consequences 10 years after diagnosis were compared with consequences reported 3 and 4 years after diagnosis. RESULTS: Seven categories of negative consequences were identified: bodily concerns, existential thoughts about loss and life (new at 10 years), psychological problems, difficulties interacting with others, health worries (new), fertility concerns (new), and frustrations about health care (new); and six categories of positive consequences: positive view of life, positive view of self, compassion for others (new), close relationships, gained knowledge about disease and health care, and financial gains. Consistent with previous time points, bodily concerns were reported most often. The majority of survivors (n = 22) reported both negative and positive consequences of their former disease. Few reported only negative (n = 2) or only positive consequences (n = 4). CONCLUSIONS: Ten years after diagnosis, most survivors reported both negative and positive consequences. New themes, relevant to young adulthood and long-term survival, were identified. Health care professionals treating young adult survivors may anticipate and address problems regarding physical health, fertility, and health care but may also reinforce positive affect by addressing survivors' positive views of life, sense of self, and close relationships.

Cancer during adolescence: negative and positive consequences reported three and four years after diagnosis.

Persons diagnosed with cancer during adolescence have reported negative and positive cancer-related consequences two years after diagnosis. The overall aim was to longitudinally describe negative and positive cancer-related consequences reported by the same persons three and four years after diagnosis. A secondary aim was to explore whether reports of using vs. not using certain coping strategies shortly after diagnosis are related to reporting or not reporting certain consequences four years after diagnosis. Thirty-two participants answered questions about coping strategies shortly after diagnosis and negative and positive consequences three and four years after diagnosis. Answers about consequences were analysed with content analysis, potential relations between coping strategies and consequences were analysed by Fisher's exact test. The great majority reported negative and positive consequences three and four years after diagnosis and the findings indicate stability over time with regard to perceived consequences during the extended phase of survival. Findings reveal a potential relation between seeking information shortly after diagnosis and reporting a more positive view of life four years after diagnosis and not using fighting spirit shortly after diagnosis and not reporting good self-esteem and good relations four years after diagnosis. It is concluded that concomitant negative and positive cancer-related consequences appear stable over time in the extended phase of survival and that dialectical forces of negative and positive as well as distress and growth often go hand-in-hand after a trauma such as cancer during adolescence.

Are nurses and physicians able to assess which strategies adolescents recently diagnosed with cancer use to cope with disease- and treatment-related distress?

PURPOSE: It was examined whether nurses and physicians are able to identify whether adolescents with cancer have used certain strategies to cope with disease- and treatment-related distress. METHOD: Adolescents (N = 48) were asked whether they had used a number of strategies to cope with disease- and treatment-related distress and, if so, the extent to which they had used these. Nurses and physicians were asked to answer the same questions on behalf of a certain adolescent. RESULTS: Nurses overestimate the extent to which adolescents use strategies to cope with distress, and neither nurses nor physicians, physicians somewhat more, are successful in identifying the extent to which certain adolescents use strategies. CONCLUSION: Health-care staff's possibilities to assess how patients cope with disease- and treatment-related distress should be increased. A number of changes in education and the organization of clinical care, especially with regard to assessing patients' needs, are suggested.

Parents as their infant's primary caregivers in a neonatal intensive care unit.

The aim was to explore parents' and professionals' opinions about parental performance of care in a neonatal intensive care unit. Forty-three parents and 85 nurses completed questionnaires composed of a list of 95 caregiving activities; 14 nurses and 4 neonatologists participated in four focus group interviews. Considerable differences appeared in parents' and nurses' responses about parents' participation in their infants' care. All listed activities were marked as optional by at least a few parents. Agreement was reached about parents as their infants' primary caregivers, based on individual assessment of parents' willingness and ability, with nurses acting as educators and supporters instead of caregivers.